Earlier this year, I wrote about how my mom’s death changed my perspective about end-of-life
care. After watching her final days, I no longer felt so certain that society
should pressure families to make quick decisions about withdrawing
life-sustaining treatment. I wrote:

We
knew her end-of-life wishes: She had told my dad that she didn't want to be
artificially kept alive if she had no real chance of a meaningful recovery. But
what was a real chance? What was a meaningful recovery? How did we know if the
doctors and nurses were right? In all my reporting, I'd never realized how
little the costs to the broader health-care system matter to the family of a
patient. When that patient was my mother, what mattered was that we had to live
with whatever decision we made. And we wouldn't get a chance to make it twice.

It was one of a number of experiences with the health-care system
that shaped my thinking as a reporter. Every time I write a story, I try to
think about it from the lens of patients who deal with the system each
day. I try to explain it and demystify it for them, to the best of my
ability.

Lately, I’ve been wondering about whether other journalists have been
affected by their own brushes with the medical system. I asked four of them to
weigh in — Peter Frost of the Chicago Tribune, Gary Schwitzer of HealthNewsReview.org, Lisa Chedekel of Connecticut Health Investigative Team and Katy Butler, author of the book “Knocking on Heaven’s Door.” Here’s what they told me:

Peter Frost

My mom, Pam, was diagnosed with breast cancer in 1985, beginning a
six-year battle with the disease that she eventually lost. She went through
round after round of chemotherapy, radiation and other treatments, racking up
medical bills that surely would have bankrupted my family if not for insurance,
which we had through my father’s employer. Of course, the out-of-pocket
expenses still ate into some of my father’s savings and investments, though not
nearly to the extent they would have without coverage.

From that point forward, as I grew up, my father beat it into my
head that I must always be covered, no matter the situation. He continued to
cover me through college and until I got my first professional job. Among the
first thing he asked me when I was offered the job: What kind of health
insurance policy do they offer? To me, going without coverage for even a day
was never worth the risk.

Thank goodness for that. While I was far too young to know exactly
how much my mother’s bills affected our family finances, a very real lesson
came when my wife and I started having children. Both of them (now 5 and 2.5
years old and healthy) spent time in the hospital before coming home to us. Our
son spent a month in a neonatal intensive care unit in Virginia before arriving
home. The hospital bill for him alone was north of $90,000. The vast majority
of it was paid for by my insurance company, after a fair amount of bickering
and wrangling. Our share was still more than $6,000.

That experience alone was enough for me to question how this vast,
complicated system functions, and how people with far less financial and
educational wherewithal navigate it. So when I started covering the subject for
the Chicago Tribune, particularly the Affordable Care Act, I wanted to focus my
energy on explaining to people how this law works, how to approach the decision
to buy insurance, what kinds of things they need to think about before signing
up for coverage, and beyond that how to actually use the system.

Gary Schwitzer

Every single encounter I’ve ever had with the health-care system
shapes my perceptions about how “the system” works and how we should write
about it. Here are a few stories:

My own ACL injury from playing basketball. A top orthopedist did the standard physical exam (the Lachman test of instability in the knee) and said, “I can tell from this exam what’s wrong, but we
have an MRI which will provide a very clear picture … and your insurance will cover it.” Like probably any consumer would, I agreed to the MRI. It merely confirmed what the physical exam had already established. Bottom line: over testing and overspending and waste. (And this anecdote is from 25 years ago! I can’t imagine how many times it’s repeated today.)

My mother-in-law probably had grounds for a lawsuit for what was to kill her, but she wasn’t the litigious type. In her 80s, her doctor pushed her to have a colonoscopy. The prep used at that time has been linked to serious problems and is at the core of many lawsuits. Within weeks she changed dramatically, was diagnosed with severe kidney disease and ended her life in terrible illness with the ups and down of dialysis. Bottom line: Why the hell are we doing colonoscopies on someone in their 80s?

What we’re going through now with “assisted living” for my 93-year-old Dad. The Frontline/ProPublica project addressed many of the themes that we’ve seen - fortunately none as tragic as those reported. But the “it’s really just expensive real estate” theme is something families just don’t realize until they get into this. Even my Dad’s own primary care physician thinks there’s constant “nursing” care provided … and he has many patients who live in my Dad’s facility. “Assisted” living means you only get what you pay for from an expensive a la carte menu of services. There is nothing “assisted” built into the equation unless you pay for add-ons. At least at my Dad’s facility. Bottom line: This is a huge, largely unregulated industry about whose products/services consumers know very little.

Lisa Chedekel

In 2004, my Dad, then 77, was hospitalized for a leg infection
that came out of nowhere over Thanksgiving. His forgetfulness (probably
dementia, in hindsight) really escalated while he was in the hospital and later
in a nursing home, where he was sent for rehab.

I was an investigative reporter for The Hartford Courant at the
time — known for asking questions and digging up information. But when it
came to my father, like many in my generation, I had a doctor-knows-best
mentality. I didn’t ask many questions through his rehab stay, when he acquired
a MRSA infection, became increasingly agitated and isolated (he was a very
social guy, even after my Mom died), and was restrained by alarms and sedating
medications. The whole experience was overwhelming.

He came back home with a list of prescriptions and a walker; that
was the entire plan of care. Risperdal, Aricept, Trazodone
— he hung in like a fighter for 18 months before his body and mind gave
out, and one night I held his hand, told him I would be OK — and he was
gone.

Not until after he died did I realize how little I knew about his
care — how little I had asked. I just wanted him to get better! With no
cure for dementia, and no requirement that providers seek consent for
medication or treatment changes, the onus on family members to ask questions is
enormous — and difficult, since most of us are juggling jobs and kids. We
“turn over” our parents to the system. The experience made me realize that
families aren’t part of the eldercare system unless they purposefully decide to
be. And I didn’t.

A lot of the reporting I do now is an attempt to equip patients
and families with information, so they will step up and ask questions, the way
I wish I had.

Katy Butler

My family's experience utterly transformed my sense of what is
needed in health-care reporting. Like most Americans, I had no idea how bad our
health system can be for the elderly and those with chronic illnesses until I
saw it firsthand.

I didn't go out looking for health-care stories to write — this
one fell into my life like a ton of bricks when my father had a major stroke at
the age of 79 and I became a part-time family caregiver and medical
decision-maker for two elderly and ailing parents.

Things got worse when, a year later, he was given a pacemaker
without any meaningful discussion of his options or the effect it might have on
his desire, over time, for a peaceful, good, and timely death.

Over the next six years he descended into dementia and
near-blindness, with the pacemaker the easiest path to a natural death.

As a longtime journalist, I simply couldn't rest until I
understood why his interactions with the health-care system were as unhelpful,
and sometimes downright damaging, as they were.

I didn't understand then — except on the most superficial
level — that our health-care system (Medicare in this case) reimburses
for tests and procedures, but not for time. And the older you get, the more
those tests and procedures become risky, and the more you need time, time with
physicians who have known you for years.

I think first-person stories cut through the muck and
mystification, the bizarre financing structures that pass as normal here (and
nowhere else in the developed world), the underestimated damage done by
overtreatment and the inequities surrounding our current health-care system.

5 comments

Was this phrase meant to be “with the pacemaker barring the easiest path to a natural death”? Otherwise, the sentence doesn’t make sense. Be nice to have some clarification.

It matters partly because my mother has left bundle branch block and every time she has any kind of problem, the cardiologist does all sorts of testing again, and there’s mention of a need for a pacemaker. My mother is in her 90’s, and she’s aware of what a pacemaker is (my father had to have one), and she is mentally competent. But it’s difficult for us to discuss these issues, i.e., how much medical care do you want? She has a medical care directive that limits care and in it she states she wants to stay at home for as long as possible, and if it is possible, to die there. At least one of her friends declined “medical” care when she became ill, chose death instead. That woman was able to die at home, we all still miss her (she died 3 years ago) but I believe her choice was a brave one. She lived in Argentina, apparently there is not as huge a push to try “everything” no matter how expensive or destructive of quality of life, to extend “life” there. Neither the MD, nor her daughter seems to have resisted or counseled against her decision.

Nothing shatters myths about healthcare systems more than the reality to which one is exposed when it involves a member of the family. My mother’s horrific ordeal of pain and neglect and a record number of medication errors prompted a change in my career and a focus on the epidemic of medical errors that is the third leading cause of death in the United States and Canada.

It is unacceptable that more than a decade after the problem first came to light, basic errors are still being made on a huge scale every day. The healthcare sector has advanced many excuses. We have a different approach. It is called the campaign to “just stop it.” More at http://www.patientprotection.ca

Recently, a patient advocacy group announced a goal of eliminating preventable deaths resulting from medical errors by 2010. At the most conservative estimates, that means at least 1.2 million Americans will die over the next six years while the healthcare industry gets its act together. That would be like the whole city of Dallas being wiped out. Surely we must do better.

Obamacare is simply a give-away to the pharmaceutical and insurance industries. The idea that “America has the best healthcare system in the world” is either a myth, or a fantasy, depending on your perspective. It’s not about “health care” - it’s about MONEY & PROFIT. These are just a few of the sad truths you kids finally learned for yourselves. Just imagine what LIES you still believe about the pseudo-science of psychiatry, and the MYTHS of “mental illness”...(....hint: DRUGS & money/profit….)....
You kids need to learn to TELL THE TRUTH. The A.M.A. is NOT YOUR friend….

The real problem with our health care is that insurance companies have set the tone for it all, and it even ends up in Medicare. Anyone on the instructor level in a teaching hospital will tell you that the most important thing in patient care and diagnosis is TIME spent with the patient. Since insurance sets limits on that, doctors are now used to being regulated-no matter what the problem- to 15 minutes with patients. And they are also specifying that only one ‘problem’ can be discussed during that time. My daughter was recently in her doctor’s exam room, and his nurse was getting the BP, history before he came in, so she asked what my daughter was seeing him for. She replied she had two things she needed him to look into; his nurse told her she would have to make a second appointment for the other problem. My daughter works 10 hour days in a professional arena. She also has the
majority of responsibility of her son, as divorced mother. One appointment was hard enough for her to schedule and totally unnecessary for the information she wanted.
Having traveled to around 30 countries, most of which have Universal care, and gone to 4 international medical meetings, talking with medical people there, as well as people on the street….....I know they LOVE universal health care, have better (sometimes FAR better) health care than we have and pay MUCH less for it…and the government does not tell them how to practice medicine like the insurance companies do here, limiting time for patient visits. The government DOES get bids on drugs, health aides etc, while demanding good quality, that keeps the price down for all. And there is no middleman picking up the profit.

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